PJS seems to affect people of all races and in all regions of the world.
For many years, I've been wondered whether PJS disproportionately affects people of any race. For answers, I first studied the medical literature (websites, journal articles and text books), then personal stories of PJS people around the world. Many years
ago a young African-American woman with PJS and I exchanged emails. She'd
had a rough time with PJS and I've since remembered her statement, "Life is
hard enough already and this isn't making it any easier." This further
sensitized me to how race affects medical care and access to care and even the
case reports written by doctors.
Friday, February 26, 2010
Breast and Gynecological Cancers in PJS Women
Scary stuff
Read at own risk
These are a few articles on the topic published between 2000 and 2010.
To read complete abstracts, go to http://www.ncbi.nlm.nih.gov/sites/entrez
and enter PMID # into search box.
Read at own risk
These are a few articles on the topic published between 2000 and 2010.
To read complete abstracts, go to http://www.ncbi.nlm.nih.gov/sites/entrez
and enter PMID # into search box.
The PJS Gene & Endometrial Cancer in Mice
This isn't about PJS people, but genetically engineered mice!
Yet it's interesting because we know that we're at increased risk of
reproductive tract tumors and the authors explore some possibilities about why &
how. Also, they used rapalogs (like RAD001 and Rapamycin that we've discussed
here) to reduce endometrial cancer progression and shrink tumors in the
affected mice.
It's interesting to consider. Perhaps someday research and trials will help
us PJS folks, not just the PJS mice. :)
Love,
Stephanie
***********
Yet it's interesting because we know that we're at increased risk of
reproductive tract tumors and the authors explore some possibilities about why &
how. Also, they used rapalogs (like RAD001 and Rapamycin that we've discussed
here) to reduce endometrial cancer progression and shrink tumors in the
affected mice.
It's interesting to consider. Perhaps someday research and trials will help
us PJS folks, not just the PJS mice. :)
Love,
Stephanie
***********
Summer Fun 2010! Weekend of June 26, 2010
OUTDATED!
FOR ARCHIVE ONLY!Mark your calendars!
Scientists investigating the PJS gene, LKB1, might want to head to Marseille, France for a conference titled "The Tumor Suppressor LKB1" From Basic Science to Clinical Applications". June 24, 25 & 26, 2010. http://lkb1.com
On the same weekend, people whose lives are affected by PJS can enjoy the company of others at the second PJS Meet and Greet. We will gather on June 26 in Santa Rosa, California in the San Francisco Bay Area. Meet and Greet blog.
Friday, January 29, 2010
My earlier patient-view reports
My earlier patient-view reports
Since 2000 I’ve been writing about Peutz-Jeghers syndrome for the PJS Online Support Group. My reports have included updates on medical journal articles, resources and explorations of topics of interest to people with PJS, their loved ones and health care providers.
Several of these reports are available at http://peutz-jeghers.com/artrep.html
Peutz-jeghers.com is a wonderful resource created by Karen Oyler. It is of, for, by and about Peutz-Jeghers people & our gene (LKB1/STK11).
Unfortunately the information explosion has made it impossible to keep that website up-to-date.
This blog will hopefully serve as a news source for folks interested in PJS and the PJS gene (LKB1/STK11).
Rather than republish my earlier reports here, I will direct you to http://peutz-jeghers.com/artrep.html
Since 2000 I’ve been writing about Peutz-Jeghers syndrome for the PJS Online Support Group. My reports have included updates on medical journal articles, resources and explorations of topics of interest to people with PJS, their loved ones and health care providers.
Several of these reports are available at http://peutz-jeghers.com/artrep.html
Peutz-jeghers.com is a wonderful resource created by Karen Oyler. It is of, for, by and about Peutz-Jeghers people & our gene (LKB1/STK11).
Unfortunately the information explosion has made it impossible to keep that website up-to-date.
This blog will hopefully serve as a news source for folks interested in PJS and the PJS gene (LKB1/STK11).
Rather than republish my earlier reports here, I will direct you to http://peutz-jeghers.com/artrep.html
Friday, January 22, 2010
Wednesday, January 13, 2010
Adhesions - internal scar tissue
This report is from October 2001. - Stephanie
*********
Well, this report from a patient view is a little more grisly than usual. I'll apologize in advance and warn away the squeamish.
I assume that readers are familiar with small bowel obstruction due to polyps. List members have given many reports of polyps causing blockage and/or intussusception. But, in the general population, surgical adhesions are a far more common cause of small bowel obstruction. Because many list members have had abdominal surgery (laparotomy and laparoscopy), we are at risk for obstruction from both polyps and surgical adhesions.
*********
Well, this report from a patient view is a little more grisly than usual. I'll apologize in advance and warn away the squeamish.
I assume that readers are familiar with small bowel obstruction due to polyps. List members have given many reports of polyps causing blockage and/or intussusception. But, in the general population, surgical adhesions are a far more common cause of small bowel obstruction. Because many list members have had abdominal surgery (laparotomy and laparoscopy), we are at risk for obstruction from both polyps and surgical adhesions.
Tuesday, January 12, 2010
PJS Meet & Greet
OUTDATED!
FOR ARCHIVE ONLY!My friend Casey is working on the 2010 PJS Meet & Greet to take place June 26 in Northern California. Mark your calendars and follow her blog at http://pjsmeetandgreet.blogspot.com/
How to Have a PJS Free Baby
How to Have a PJS Free Baby
Stephanie Sugars
December 2008
The question about how to have a PJS-free baby came from people with PJS living in China, but my answer will help others around the world. I've been studying for months and have many resources. I will simplify the steps in this original email and give explanations, thoughts and references in future emails.
Remember, I'm a patient not a medical professional. This isn't medical (or ethical) advice! But it is a patient-view report. My goal is to address questions of people with PJS including potential parents.
Here's a recipe for a PJS-baby, using current techniques (in vitro fertilization and preimplantation genetic diagnosis):
Stephanie Sugars
December 2008
The question about how to have a PJS-free baby came from people with PJS living in China, but my answer will help others around the world. I've been studying for months and have many resources. I will simplify the steps in this original email and give explanations, thoughts and references in future emails.
Remember, I'm a patient not a medical professional. This isn't medical (or ethical) advice! But it is a patient-view report. My goal is to address questions of people with PJS including potential parents.
Here's a recipe for a PJS-baby, using current techniques (in vitro fertilization and preimplantation genetic diagnosis):
Saturday, January 9, 2010
NCCN PJS Screening guidelines
You'll need to get your own copy of this article to follow this post. You'll need to register at NCCN (National Comprehensive Cancer Network) or Medscape. It's free and two of 69 pages are devoted to PJS. It would be a great resource to share with your doctor or genetic counselor.
Friday, January 8, 2010
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